Autism analysis continues to emphasize primary science over enhancing interventions | Spectrum
Autism researcher, ASD roadmap
My lifelong fascination with science is focused on its potential to improve our lives in practical and meaningful ways. I began my career as a clinical psychologist and research psychologist with a focus on autism more than a generation ago when autism research was expanding rapidly. It seemed inevitable that basic research studying the characteristics and causes of autism would lead to insights that we could translate into increasingly effective interventions. I expected a gradual shift from basic science to studies of interventions that systematically targeted specific skills, behaviors, and populations.
I also expected that such translational research would begin to make its way beyond academic centers into the community, where researchers could show how effective practices can be expanded to reach all people living with autism, including those, their behaviors, and the like Level of concurrent intellectual disability induce them to do so. endangered for accommodation outside the house. And as my own daughter reached adulthood with the condition, I hoped to see more research demonstrating programs and practices that promote better quality of life for adults with autism.
Unfortunately, there were no such shifts. The preponderance of autism research, according to my own research and the studies of others, has focused more on the fundamentals than on the applied sciences. I’ve spent much of the last decade understanding why the research arc hasn’t shifted further towards effect.
Autism Research Sheet:
To investigate this question, I examined articles published in the Journal of Autism and Developmental Disorders (JADD) that focus on 1979, 1989, 1999, 2009, and 2019. My analysis appeared in a special issue of the magazine in May that marked four decades. since ‘Autism’ debuted as a standalone diagnosis in the Diagnostic Statistical Manual of Mental Disorders, the diagnostic manual used in the United States. JADD is the only autism-focused magazine to span this story.
My review of all content from the five selected years resulted in 616 articles describing original empirical research (as opposed to review articles, case studies, letters, and comments). Ninety percent have been published in the last two years I’ve studied, confirming the explosion of research many of us have witnessed. In fact, more articles were published in 2019 than the four previous dates combined, likely reflecting the surge in US research funding following the passage of the Combating Autism Act in 2006.
I classified each of the 616 studies as basic or applied research. Basic research, by my definition, explored the characteristics, associated characteristics, general courses and possible causes of autism. Applied research included studies that tested assessment or intervention practices directly with clinical populations, and studies that looked at factors that might influence those practices, such as: B. Inequalities in access to services.
I found no evidence of a shift towards applied research over time. The share of basic publications remained between 58 and 60 percent, except in 1989 when it rose to 80 percent. Although some types of applied research – such as treatment practice surveys and studies of web-based tools and resources – have increased over the years, research on interventions went from 24 to 31 percent in the first two periods to just 12 percent in the first two periods back last two periods. In addition, the majority of intervention research continues to take place in specialized university or hospital facilities. Only 6 percent were done in community facilities, a proportion that did not grow during the study period.
One of the more disappointing trends is the lack of research into interventions that could help people with the highest levels of disability. The proportion of treatment studies that included children with severe form of autism decreased from 1991 to 2013, according to a 2018 literature review, suggesting that the research arc is turning away from those who may have the most to gain .
Despite the lack of movement towards applied research that touches communities, there is a partial roadmap for this path. Two popular tools for autism screening and diagnosis – the Modified Checklist for Infant Autism and the Autism Diagnostic Observation Schedule – emerged from basic research more than 30 years ago. They have since been widely used in applied research and can aid in the early detection of autism, which many say is critical to improving outcomes. The missing part is to determine how far these tools have influenced community practice, for example access to early intervention.
There is an obvious reason why applied research in general, and community-based intervention research in particular, remains stunted. Such studies are simply more difficult and costly. The latter requires researchers to enter into partnerships with community institutions. This takes time and slows the pace of publication that it takes new researchers to start careers in an increasingly competitive world.
More research is needed to better understand trends in autism research. My study simply counted the number of studies in a scientific journal. Would the results be the same for other magazines focused on autism? Are there other ways of characterizing the relative weighting of basic research versus applied research in research publications or in funding? And of course, it’s possible that the arch will begin to flex in another decade or so. We may just need more time on basic research to pave the way for not only more basic research, but better education programs, treatments and outcomes as well.
Peter Doehring is an independent autism researcher and consultant based in Chadds Ford, Pennsylvania.
Quote this article: https://doi.org/10.53053/KKFR6463